A regional daily journalist has opened up on her 18-month fight to be diagnosed with an “unseen” illness.
Liverpool Echo life writer Elle May Rice has gone public on her struggles with fibromyalgia, a long-term condition that causes pain all over the body.
The exact cause of fibromyalgia is unknown, but it is thought to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system processes pain messages carried around the body.
Elle, pictured, believes the illness was triggered after she developed Bell’s Palsy, an unexplained episode of facial muscle weakness or paralysis, during the coronavirus pandemic in 2020. However, it took multiple trips to the doctor and even hospital afterwards for her to be diagnosed in 2021.
In a first-person piece about her experience for the Echo, Elle wrote: “If my fibromyalgia is controlled then it’s possible to live a normal life – aside from the lengthy list of medication – and carry on with my usual activities. However, when I experience a fibromyalgia flare up things are often out of my control.
“A flare-up can last anywhere from a few days to a few weeks and cause an increase in pain and worsening of other symptoms. Many people have a few warning signs they can look out for, but for others it just happens out of the blue.
“For me, a change in the weather and lack of sleep are big triggers. Even almost two years in, I can’t always predict when a flare-up is about to happen, but when they do it can feel like I’m back to square one.
“Having to explain to work, family and friends that while I’m not sick with a stomach bug or the flu, lifting my head off the pillow or taking a few steps can be excruciating. People don’t always understand why I can’t do certain things or have the energy they do and it can be difficult to explain it.
“There are plenty of people out there that insist or believe that fibromyalgia isn’t real, which I can somewhat understand considering just how many tests and scans told me there was nothing wrong with me. Many fibromyalgia symptoms are similar to those of other conditions and there’s still no specific test to do for fibromyalgia.
“I’ve even dealt with doctors who clearly didn’t consider fibromyalgia to be an ‘important’ illness. But when it’s stopping me from living my normal day-to-day life, I can tell you it is very, very real.
“With an illness that’s ‘unseen’ or ‘invisible’ there’s stigma around it, but until you’ve lived it, you can’t know another person’s pain. And you certainly can’t be the judge of how debilitating that pain is or is not.”
Elle went on to offer advice to fellow sufferers of fibromyalgia.
She added: “It’s an uphill battle, is what I can tell you. The symptoms of fibromyalgia are similar to many other illnesses so there’s a lot of confusion over what you may or may not have. And they can all pop up at different times, making it difficult to look at the big picture.
“My advice would be to make a note of anything and everything – that’s what worked for me. Looking at each of the symptoms separately can give an entirely different diagnosis and treatment, and actually leave you in pain for longer because you’re treating the wrong illness.
“Getting a doctor who was willing to look at the big picture was so important to my journey – if one doesn’t listen, go to the next one and the next, because it’s your life and health that’s being affected and it is worth the battle.
“It may have taken me 18 months to get a diagnosis and longer still to get on the right path when it came to treatment, but knowing that I can get up and go to work, run around after my little nieces or even just get a good night’s sleep makes it all completely worth it.
“It was worth the hospital visits and the constant phone calls to the GP to know I’m feeling so much better now.”